A lot has happened since yesterday. We spent the majority of the day trying to get A to take a nap. We could see how tired she was but she was unable to let her body sleep. Finally, just before we had to leave for a birthday party, she fell asleep. 30 minutes later I had to wake her and it was not a good thing. She went from a mildly relapsing child to a full blown, scary mess. I could tell that we were on the path to losing her quickly.
When I had called Dr. L, the vmail had a number for medical emergencies. Our ped and I decided this was an emergency. We either needed to get A to our hospital for IVIG or proceed with the Plasmapheresis. So, I called the number on the vmail. I got a hold of the doctor and she was at dinner. She eventually called me back and I quickly explained the situation and how grave it is. She asked me if I thought I could get A on a plane. I said that I still could at this point but that the more time that went by, the harder it was going to be.
Having been through several of these procedures before, I know that if we wait all the way until Monday for the staff to call me back and work through logistics, it would be at least Friday before we could start the procedure. It’s not fair to A to wait that long. I don’t think that anyone in this house could make it that long either. If we needed to do IVIG to buy time then that is what we would need to do. But somehow God must have been looking out for us and things have so far just worked out.
So we returned from the birthday party last night, had dinner, put everyone to bed and then set about making travel reservations. I feel accomplished because John and I had the forethought to plan out dinner before going to the birthday party which meant we didn’t have to eat out. However, that is really our only accomplishment. Upon coming home, it was so chaotic here that our house now looks like an episode of Hoarders. It took a lot of time to find the right travel schedule last night. Do you pay a little bit less and take an out of control child on a 13 hour journey with 2 layovers? Or do you pay a premium and take a direct flight? There aren’t that many direct flights for such a great distance but we ended up choosing the direct light and paying $1000 for each ticket since the price difference wasn’t that great.
Now we need to pack…Again not what everyone else was likely doing on their Saturday night.